A family carer crisis in on the horizon for adults with disabilities

What will happen to our loved ones when we’re no longer able to be there for them? It’s a fear we all have, but for people who are carers for their family members, it’s an especially distressing question.

A new report from the charity Sense found that over two thirds of families caring for disabled adults live in fear of what will happen to their loved one when they are no longer able to provide support. Even more worryingly, 75% of family carers say they have no long-terms plans for what will happen when they can no longer provide vital care and support. This could be due to ageing and being unable to provide support or passing on.

In England and Wales, 1.3 million carers are aged over 60, and Sense are concerned about a looming care crisis for disabled adults when these carers are no longer able to support their family members. After being cared for all their adult lives, many people who require care have complex needs that may not be met in a care home.

Noreen Ahmad with her parent and carer, Inge Ahmad. Image: Sense

Inge Ahmad (68), from North London, contributed to the report. Inge cares fill-time for her daughter, Noreen (35) who has learning disabilities, is quadriplegic, blind, epileptic, and without speech. Inge said:

“Noreen is a delight, but requires fill-time support. I feel under constant pressure. I really worry about what will happen to Noreen if I can longer take care of her. I don’t think that the local authority has many options, and the decision would be based on ‘where there’s a bed available,’ rather than appropriateness of the care.”

In response to the report, Sense have said that the government need to step in. Sense Deputy CEO Richard Kramer said we need “to tackle the pressures facing families with better planning for future care needs and greater investment in social care to combat this looming crisis.”

In the report, Sense found that a staggering 95% of family carers say they have little to no trust in local authorities to provide adequate support to their loved one. It was also found that only 1 in 3 local authorities know how many disabled adults are being cared for by family and friends at home.

Something clearly needs to change so that the government and local authorities will step up and earn the trust of family carers. Planning for the future isn’t an easy task for anyone, especially if you have to consider the needs of a family member with disabilities. Sense hope that the report will urge the government to act now to offer support to families who need it before it’s too late.